Support Needs, Service Gaps and Perceived Solutions From the Perspectives of Young Persons with ASD and Their Family

Background:

There is a dearth of literature examining the experiences, perspectives, care requirements and outcomes of individuals with ASD from a lifespan perspective.  Accordingly, there is substantial need to hear the voices of individuals with ASD and their families in order to ultimately respond to these identified needs with targeted services.

Objectives:

This mixed method study, based on a case study design, examines the lived experience of young persons with ASD </=25 years of age, with a focus on their service needs, current access to services, and potential gaps between services needs and access. 

Methods:

Using a comprehensive, mixed method approach, children/young adults with ASD and their parent(s) participated in the following data collection processes:

(1)   Administration of child/youth assessment measures examining: autism symptoms, intelligence, language development, adaptive functioning, academic achievement, anxiety, attention, behavioral, social and emotional supports, motor skills, sensory-based symptoms, quality of life, and parent stress;

(2)   Child and parent qualitative interviews illuminating experiences and perceived needs;

(3)   Family assessment facilitation examining familial dynamics and contextual issues over time.  

Results:

To date, 16 inter-disciplinary, holistic case studies have been completed representing a range of participant (with ASD) ages:  4 preschool, 6 school age, 5 adolescent, 1 young adult. Sample variation includes diversity in ASD functioning (e.g., language/communication and intelligence), SES, services received, and cultural background.  Multi-method analysis approaches include statistical analysis and qualitative content analysis, within a mixed method concurrent triangulation design.  Preliminary process and outcome findings are as follows:

Process Findings - Methodological complexities inherent in this comprehensive case study highlight clinical challenges associated with conducting holistic ASD assessments. Difficulties include the time and scheduling demands required for generating comprehensive multidisciplinary and integrated case formulation as well as reporting and supporting processes for families.  To date, assessment-based case studies have yielded an emerging balanced model comprising a pragmatic ‘tag team’ approach in which intra-team processes and communication strategies have been developed.  Preliminary findings highlight the urgent need for an evidence-informed model for comprehensiveness yet efficiency in the generation of case-based knowledge for comprehensive resource planning. 

Outcome Findings - Young persons with ASD and their families are profoundly impacted by ASD in multiple sectors of their lives, and require a continuum of supports.  Current needs are often not being met within current service delivery models.  Findings identify a patchwork of services for families including public and private services, rendering the need for (i) increased services, (ii) continuity and navigational supports over child and adult development, (iii) family-centred models in which needs are holistically addressed, and (iv) ongoing opportunities for meaningful relationship formation between families and service providers. 

Conclusions:

Findings highlight a range of multi-layered challenges facing individuals and families as they navigate the complex service delivery network.  In varying degrees, parent participants express frustration and desperation as they independently seek services.  Over time, they experience exhaustion, yet an increased aptitude and confidence in identifying needs and priorities. Overall, these findings critique existing models of service delivery, invite increased service access and coordination, and provide recommendations for targeting these needs with well-resourced and orchestrated services.